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About Us

Our family has been blessed with four beautiful babies. Our twin boys, Rhys and Bentley, were born in July 2008 at 23w5d gestation. Bentley developed an infection in the womb and was only with us for 13 hours after birth. Rhys spent five and a half long months in the NICU before coming home and he works very hard to continue to beat the odds.

Zoe Elizabeth was born in March 2010 at 36 weeks gestation. After 16 weeks of modified bedrest we were thrilled she was born healthy with no complications. She is full of drama and keeps us on our toes!

Our latest addition was a huge surprise - completely unexpected, but very much wanted. Beckett was born in July 2011 at 36.5 weeks gestation. His arrival marked three children in the house under three years of age. It's sure to be interesting around here!

Tuesday, August 20, 2013

SDR approved!

Four days, 1800 miles, and a doctor visit later, we have our answer. Rhys was accepted for his SDR surgery! We are so very excited, but nervous as well. This is a big deal! It's invasive, but our doctor has modified the procedure so that it is as minimal as possible. If you read the link I provided in the previous post you will know that they remove part of the bone on the spine and snip the problem nerves. I'm crazy stressing about this, but we know it's the right thing for Rhys. In fact it's probably his only hope of being an independent walker. Dr. Park thinks Rhys is spastic triplegic, which means three limbs have issues. I agree with this. His right arm has always lagged behind his left in terms of ability and dexterity, but he it's not the typical heavily restricted use you'd normally think of. Dr. Park thinks this surgery will allow Rhys to sit unassisted in all position (holy cow I can't even imagine life with Rhys able to sit without help), remove the scissoring when taking steps, and also could improve his right arm, speech and please oh please his eating. About four months after his SDR he will have lengthening procedure called PERCS. The combination of these will hopefully give Rhys the ability to walk with his gait trainer in a purposeful way, instead of only at therapy. Our expectations aren't ridiculous, and we don't see this as a miracle cure. If Rhys were only able to gain unassisted sitting and no spasticity it would be worth it. For him and us. It's hard to lug 33 pounds around day after day. But we will continue our five-a-week therapy routine, and work really hard for something more than that. My goal is for overall improved quality of life for Rhys, so I will take whatever we can get! Timing right now is up in the air, but we are shooting for October or November. It would be far more complicated to take Zoe and Beckett with us, not to mention Cody and I would be tearing our hair out having to go between the hospital and hotel with those two, so we're trying to arrange it where the two littles can stay behind. Surgery lasts 3-4 hours, and usually requires a five night stay. That's all we know right now, but we're excited to get this process started.